I can’t travel and haven’t been able to in 2 decades. I also cannot afford to go even if I could travel. I’m still on the volunteer commitee for this event. My career was spent on the streets with those without homes before I quit because the system was involved in killing the folks I was interested in supporting. The “most disenfranchised” people are why I am still alive – they are who motivate me to keep going…I am ostracized by my family and don’t have the funds for the medical care I need. I am aware that I remain privileged in this ravaged state I exist in. Yinyang, you’re making disturbing and absurd assumptions about people you clearly do not know. I hope you talk to Will. I’ve had enough. It hurts to hear people make division where it’s simply not necessary to make it.
the irony of hating the word “mad” on a website called “mad in america!” ha ha.
that said, I hear you and we all have different language we find triggering for sure. I personally like reappropriating the word Mad…I’m also on the volunteer crew for the camp.
Madness is an intimate connection with the chaos in the world as far as I’m concerned. My experience feels like it’s only in knowing madness that I have been able to come to understand the nature of reality, which is chaos in so many ways. Nothing to be proud about (I actually DON’T like the term PRIDE connected to Mad. — so that’s where I get triggered.
I am sorry that the language excludes you and anyone who shares your feelings. Language is a tricky beast, in my opinion. It can only point to experience and people like pointing in endless different ways.
thank you Richard. It’s so good to hear from you.
I have found that anything that helps clear the infection actually exacerbates symptoms at first…this is a crazy and awful biofilm that is embedded in the face/head and skull in late stages (that’s me). I can’t speak for everyone by any means but I know what is happening in my body. thanks for your comments!
oh wow, it’s not that I don’t feel comfortable sharing but it’s been a really long haul and so many things take part. I don’t know if you’re familiar with my work but the title of my site is “Everything Matters” because I approach everything in a profoundly holistic way. I haven’t written much in the last few years as I dove into learning about this phase of my healing but there is still quite alot about even my more recent healing journey on that site. I will write more about what I’m up to on my site perhaps now as I did go back to pharmaceuticals briefly after tending to my body with herbals for many years. I didn’t tolerate any pharma for a long time. The antibiotics and antihemetics I’ve taken recently have helped a lot and I still have a long way to go before I can know how much they’ve helped me functionally (in other words, I’m still sick and it’s clear they’ve helped both) … I went off all the pharma recently when my body said ENOUGH and now I’m still tending to my body with herbals, movement and diet as I ever am. It’s possible I’ll do other rounds of the pharmaceuticals. These infections are nasty and all I can say is I”m grateful to have found people and doctors who understand this. It’s a rarity to find truly competent people and I’m still looking for people who can really keep up with me! ha ha…I’ve been at this a long time and learned a whole lot in a world that is only beginning to understand systemic chronic infections and how the microbiome is affected.
the purpose of the article was to suggest that both dyskinesias are essentially the same thing. I can tell you that all these one item nutrional “fixes” for TD (including manganese) rarely if ever get much of a result in serious or longterm TD. In general and at best there might be brief or very small improvements. Having interacted with 100s of those with TD now in health groups dedicated to such I can say that no one I’ve interacted with has reported that manganese does much of anything at all. Manganese is an important mineral however and I’m sure there are times when people simply feel better in general for adding it to their diet if that is what that particular person needs. I’ve personally tried all such “fixes” and I also tend to nutritional issues in my own body in a profoundly holistic way across the board. Something like manganese may, in fact, be helpful as part of a holistically oriented treatment and well rounded diet etc.
insane amounts of sensitivity was my first issue too. I came off drugs years ago and thought it was just psych drug withdrawal…turned out it was these infections as well…made much worse via the drug injury. My best to you that you find your way through the quagmire. We certainly all have our very individual journeys.
hey Ted, great to see you. I’m glad you appreciated the article. Lyme is so mishandled that a lot of people with Lyme get psychiatrized just because they have Lyme and doctors are trained to disbelieve them…it’s a gaslighting machine. So there is a lot of cross-over between the two populations I’ve found…Yeah. MDs remain highly dangerous for me and so many of us! Peace to you.
That’s nice that your experience of mindfulness is that it is never dangerous or risky. It’s not my experience nor many of the people I work with. This is exactly the point of the article — we are all different and we meet this process differently because of that. If our bodies are heinously injured by drugs, for example, the healing process is sometimes also heinously bumpy and that’s quite risky at times. the fact is that is the nature of life when you get right down to it and none of us get out of here alive. I’ve embraced it and love my life but the reality of that has not changed.
I love some of your other comments I do intend to perhaps write a book on this subject and this article could only barely scratch the surface of what I am coming to understand via my own process of paying attention which does in fact lead to all the things you’ve very elegantly expressed.
And yes loving kindness is a beautiful practice I love it too and have practiced it for many years off and on. Your suggestion that it be a starter meditation is excellent as well.
it’s always worth considering the therapist may not know what the heck they are doing. My experience is the vast majority of them don’t.
If your therapist thought there was a particular way to do it she was wrong and you are right. That’s exactly what I’m talking about you find out what works for you. Good job.
Also if there is any denial involved it’s not mindfulness. Mindfulness is being with whatever is and a lot of times it’s really fucking shity stuff we have to be with.
This is actually a perfect example of someone who’s fallen for the marketing of happiness through mindfulness which is always a scam. With true mindfulness there’s absolutely no guarantee of happiness.
that’s fantastic Alan – and I was hoping you’d show up in the comments! so nice to see you.
I have a community like the one you are talking about now in my local ecstatic dance scene. From day one (5 years ago) I started talking about what was happening for me and what I was struggling with when we gathered. No one ever did anything but allow me to work on it on the dance floor as I saw fit…I ‘ve had periods of time when I couldn’t dance at all but sometimes I would stop by and sit on the floor against the wall and listen and watch for 15 or 20 minutes (that went on for about 3 years). Now I go and still need to make my own accommodations and do…no one ever says anything or asks questions. Everyone’s process is respected. For example I have not been able to build up stamina so I’ll sit on the floor against a wall and dance from that position. I have discovered it’s possible to get pretty wild on my butt against the wall! So I’ll do bits on my feet and bits on the floor etc.
For those who don’t want to sit but are interested in practicing mindfulness, I do recommend mindful movement of all kinds. If you’re moving while you’re doing it, it can be done mindfully.
thanks for all the comments. I noticed after reading them and others on social media that are similar that for many folks who’ve been psychiatrized mindfulness was forced upon them. This is ludicrous. Of course the nature of force in healing is always ludicrous and it’s why psychiatry is always problematic. Force and coercion and paternalism (we know better than you do) is at the foundation of psychiatry. That makes it a toxic endeavor from the get go.
Mindfulness is something that must be entered willingly. It cannot be forced…it’s completely antithetical to what it is as well as simply impossible. I’m really sorry that people get introduced to the idea in that way because it’s bullshit. It’s too bad mental health professionals once again display their violent tendencies when they attempt to do that.
I never encountered mindfulness or meditation as a psychiatrized person. It was something I pursued on my own in community circles…starting in college. It never got tainted and mixed up with the violence that psychiatry was in my life. It was a very non-hierarchical endeavor and has always remained that for me. It never had anything to do with mental health per se. I was interested in it for its own sake…to become a conscious human being. Not to fix me in any way…and indeed it will never fix anyone at all.
24/7 mindfulness means doing everything that way. My favorite mindfulness practice is ecstatic dance!
YES
Thank you. That’s exactly what I’m talking about.
That’s beautiful and resonates with my experience as well. The breath has always been my vehicle so to speak. I started with vipassana at 19 years old so breath has always been my focus point. Although I’ve played with many many different methods and focus as part of my journey, vipassana is what I always return to
thank you. I think about this stuff all the time as well. The trauma-informed hip therapists who think they’re so cool and who are still totally supporting the status-quo and thus hurting a fair number of those they claim to serve. thank you for continuing to raise awareness. (anyone can take a weekend certification and call themselves trauma-specialists now too…it’s dangerous and misleading at best)
SNRI’s added to the list…as if this is new information? gosh…I’ve known this for well over a decade. Many of those of us on the front lines of coming off drugs have known this for many years. I never know how I’m supposed receive these shocking “new” scientific discoveries. it seems to erase the work so many of us have been doing for so long to act like this is new information without calling attention to the many thousands who’ve known this well before the medical establishment gave a shit. I go off and hide my tail since all of us have been ignored for so long it’s like we’re not even here. I’m certainly no longer particularly inclined to talk about how many of us are still totally disabled because it’s exhausting and debilitating in ways that make it counterproductive to healing. Anyway…yeah, spread the news to all the people who continue to ignore us…maybe someday that will change too.
nice, thanks Alex
and also, yeah, on some level we are just all playing with language which is at best, always, only a pointer towards a reality none of us can grasp with language. When we can recognize that we are playing with a very imprecise tool we can lighten up…and well, play with one another. We don’t have to clobber each other over the head if we engage with one another energetically. Listen to each others hearts beyond the words. And in my mind this capacity is one of embracing spectrums…multiple, endless spectrums…
right…I don’t stop at bipolar because to me it diminishes while also used to denigrate and pathologize, but I agree that we are in some absolute sense, every human being, bipolar…if we are conscious we grasp a multiplicity of spectrums so that we are in fact, also, so much more. I wrote this in my piece that I link to above as an epilogue:
“I am life. I am psychedelic. I am kaleidoscopic. I am conscious. I am aware. I am chaos. I am silence. The term bipolar *disorder* attempts to diminish. Two poles? In a world of endless spectrums all interlacing into oneness? What nonsense. The term bipolar is attached to people like me because we frighten those “treating” us. We are sensitive, open, people in need of shamanic-like guidance. The current psychiatric regime doesn’t know how to support us in profound ways. We are finding out how to do that for ourselves and with each other. I do not identify as bipolar nor do I identify as *not* bipolar. I’m just another little human being and so are you. Please don’t project your pathology onto me.”
from this perspective bipolar simply doesn’t go far enough which is why I don’t embrace it as diagnosis…it diminishes even if it describes something that exists as well (and I’m talking beyond pathology because as pointer to pathology it’s completely off-base in my opinion)
I think we’re all the second coming of christ!!
Hello! Welcome Chris to Mad in America…
Chris is a good friend. And I’ve been working with him for a while and with what his narrative creates within me as well. I actually have a video I posted a couple of days ago that speaks to exactly that. I’ll share the link here rather than comment.
and, no, I do not personally reappropriate that term at all…in another more personal and poetic-like from the gut post also responding to our relationship I write:
I find the dialogue to be deeply enriching. In holding one another’s experience and narrative…we are both enriched.
Hey Eric,
great to see you. I am so sorry you went through such a horrible experience. I can feel into everything you said and imagine what it must have been like to some extent. I know what being that sensitive is like and I’ve had those sorts of radical back and forths with various different things I thought at first were therapeutic.
And I also I have a radically different experience with neurofeedback (and thus it is with us sensitives…different thing affect us differently at different times and different people too can have radically different experiences.)
If I hadn’t met the neuropsychologist who is now, many years later, still a good friend, I might not have come off drugs at all!! he was the first professional who treated me as an equal and told me I could come off drugs if I wanted to. Neurofeedback as practiced by him (and there are a lot of different sorts of neurofeedbacks) did nothing radical for me…and in fact did nothing at all really…I was on a massive cocktail of drugs at the time and that’s probably why…in any case…that man became a wonderful ongoing supportive friend over the years as I came off drugs and then started the long journey of healing off of them…he no longer practices and we’re still friends. We’re colleagues even. We’ve loved to share our work with one another. He understands the nature of consciousness and is very sensitive about folks like you and me…he believes everything I tell him about my radical experiences and that’s very unusual.
When I was coming off the drugs he was the first to name my experience as brain injury. That was not commonly understood when I was coming off…I documented that and now the sorts of injuries we incur are generally understood to be brain injury (among those who know drugs do that, anyway) …
I’m again sorry that the neurofeedback did that radical yoyo thing with you. A phenomena I know too well…(with other things as I’ve been healing my drug injuries) … the yoyo too seems to heal over time, slowly.
My very best to you. With love,
Monica Cassani
PS: I shared this with my friend as he is still writing and speaking and I know he’ll find it a valuable contribution. Thank you.
I can’t travel and haven’t been able to in 2 decades. I also cannot afford to go even if I could travel. I’m still on the volunteer commitee for this event. My career was spent on the streets with those without homes before I quit because the system was involved in killing the folks I was interested in supporting. The “most disenfranchised” people are why I am still alive – they are who motivate me to keep going…I am ostracized by my family and don’t have the funds for the medical care I need. I am aware that I remain privileged in this ravaged state I exist in. Yinyang, you’re making disturbing and absurd assumptions about people you clearly do not know. I hope you talk to Will. I’ve had enough. It hurts to hear people make division where it’s simply not necessary to make it.
the irony of hating the word “mad” on a website called “mad in america!” ha ha.
that said, I hear you and we all have different language we find triggering for sure. I personally like reappropriating the word Mad…I’m also on the volunteer crew for the camp.
Madness is an intimate connection with the chaos in the world as far as I’m concerned. My experience feels like it’s only in knowing madness that I have been able to come to understand the nature of reality, which is chaos in so many ways. Nothing to be proud about (I actually DON’T like the term PRIDE connected to Mad. — so that’s where I get triggered.
I am sorry that the language excludes you and anyone who shares your feelings. Language is a tricky beast, in my opinion. It can only point to experience and people like pointing in endless different ways.
thank you Richard. It’s so good to hear from you.
I have found that anything that helps clear the infection actually exacerbates symptoms at first…this is a crazy and awful biofilm that is embedded in the face/head and skull in late stages (that’s me). I can’t speak for everyone by any means but I know what is happening in my body. thanks for your comments!
oh wow, it’s not that I don’t feel comfortable sharing but it’s been a really long haul and so many things take part. I don’t know if you’re familiar with my work but the title of my site is “Everything Matters” because I approach everything in a profoundly holistic way. I haven’t written much in the last few years as I dove into learning about this phase of my healing but there is still quite alot about even my more recent healing journey on that site. I will write more about what I’m up to on my site perhaps now as I did go back to pharmaceuticals briefly after tending to my body with herbals for many years. I didn’t tolerate any pharma for a long time. The antibiotics and antihemetics I’ve taken recently have helped a lot and I still have a long way to go before I can know how much they’ve helped me functionally (in other words, I’m still sick and it’s clear they’ve helped both) … I went off all the pharma recently when my body said ENOUGH and now I’m still tending to my body with herbals, movement and diet as I ever am. It’s possible I’ll do other rounds of the pharmaceuticals. These infections are nasty and all I can say is I”m grateful to have found people and doctors who understand this. It’s a rarity to find truly competent people and I’m still looking for people who can really keep up with me! ha ha…I’ve been at this a long time and learned a whole lot in a world that is only beginning to understand systemic chronic infections and how the microbiome is affected.
my website is https://beyondmeds.com/
the purpose of the article was to suggest that both dyskinesias are essentially the same thing. I can tell you that all these one item nutrional “fixes” for TD (including manganese) rarely if ever get much of a result in serious or longterm TD. In general and at best there might be brief or very small improvements. Having interacted with 100s of those with TD now in health groups dedicated to such I can say that no one I’ve interacted with has reported that manganese does much of anything at all. Manganese is an important mineral however and I’m sure there are times when people simply feel better in general for adding it to their diet if that is what that particular person needs. I’ve personally tried all such “fixes” and I also tend to nutritional issues in my own body in a profoundly holistic way across the board. Something like manganese may, in fact, be helpful as part of a holistically oriented treatment and well rounded diet etc.
insane amounts of sensitivity was my first issue too. I came off drugs years ago and thought it was just psych drug withdrawal…turned out it was these infections as well…made much worse via the drug injury. My best to you that you find your way through the quagmire. We certainly all have our very individual journeys.
hey Ted, great to see you. I’m glad you appreciated the article. Lyme is so mishandled that a lot of people with Lyme get psychiatrized just because they have Lyme and doctors are trained to disbelieve them…it’s a gaslighting machine. So there is a lot of cross-over between the two populations I’ve found…Yeah. MDs remain highly dangerous for me and so many of us! Peace to you.
That’s nice that your experience of mindfulness is that it is never dangerous or risky. It’s not my experience nor many of the people I work with. This is exactly the point of the article — we are all different and we meet this process differently because of that. If our bodies are heinously injured by drugs, for example, the healing process is sometimes also heinously bumpy and that’s quite risky at times. the fact is that is the nature of life when you get right down to it and none of us get out of here alive. I’ve embraced it and love my life but the reality of that has not changed.
I love some of your other comments I do intend to perhaps write a book on this subject and this article could only barely scratch the surface of what I am coming to understand via my own process of paying attention which does in fact lead to all the things you’ve very elegantly expressed.
And yes loving kindness is a beautiful practice I love it too and have practiced it for many years off and on. Your suggestion that it be a starter meditation is excellent as well.
it’s always worth considering the therapist may not know what the heck they are doing. My experience is the vast majority of them don’t.
If your therapist thought there was a particular way to do it she was wrong and you are right. That’s exactly what I’m talking about you find out what works for you. Good job.
Also if there is any denial involved it’s not mindfulness. Mindfulness is being with whatever is and a lot of times it’s really fucking shity stuff we have to be with.
This is actually a perfect example of someone who’s fallen for the marketing of happiness through mindfulness which is always a scam. With true mindfulness there’s absolutely no guarantee of happiness.
that’s fantastic Alan – and I was hoping you’d show up in the comments! so nice to see you.
I have a community like the one you are talking about now in my local ecstatic dance scene. From day one (5 years ago) I started talking about what was happening for me and what I was struggling with when we gathered. No one ever did anything but allow me to work on it on the dance floor as I saw fit…I ‘ve had periods of time when I couldn’t dance at all but sometimes I would stop by and sit on the floor against the wall and listen and watch for 15 or 20 minutes (that went on for about 3 years). Now I go and still need to make my own accommodations and do…no one ever says anything or asks questions. Everyone’s process is respected. For example I have not been able to build up stamina so I’ll sit on the floor against a wall and dance from that position. I have discovered it’s possible to get pretty wild on my butt against the wall! So I’ll do bits on my feet and bits on the floor etc.
For those who don’t want to sit but are interested in practicing mindfulness, I do recommend mindful movement of all kinds. If you’re moving while you’re doing it, it can be done mindfully.
thanks for all the comments. I noticed after reading them and others on social media that are similar that for many folks who’ve been psychiatrized mindfulness was forced upon them. This is ludicrous. Of course the nature of force in healing is always ludicrous and it’s why psychiatry is always problematic. Force and coercion and paternalism (we know better than you do) is at the foundation of psychiatry. That makes it a toxic endeavor from the get go.
Mindfulness is something that must be entered willingly. It cannot be forced…it’s completely antithetical to what it is as well as simply impossible. I’m really sorry that people get introduced to the idea in that way because it’s bullshit. It’s too bad mental health professionals once again display their violent tendencies when they attempt to do that.
I never encountered mindfulness or meditation as a psychiatrized person. It was something I pursued on my own in community circles…starting in college. It never got tainted and mixed up with the violence that psychiatry was in my life. It was a very non-hierarchical endeavor and has always remained that for me. It never had anything to do with mental health per se. I was interested in it for its own sake…to become a conscious human being. Not to fix me in any way…and indeed it will never fix anyone at all.
24/7 mindfulness means doing everything that way. My favorite mindfulness practice is ecstatic dance!
YES
Thank you. That’s exactly what I’m talking about.
That’s beautiful and resonates with my experience as well. The breath has always been my vehicle so to speak. I started with vipassana at 19 years old so breath has always been my focus point. Although I’ve played with many many different methods and focus as part of my journey, vipassana is what I always return to
thank you. I think about this stuff all the time as well. The trauma-informed hip therapists who think they’re so cool and who are still totally supporting the status-quo and thus hurting a fair number of those they claim to serve. thank you for continuing to raise awareness. (anyone can take a weekend certification and call themselves trauma-specialists now too…it’s dangerous and misleading at best)
SNRI’s added to the list…as if this is new information? gosh…I’ve known this for well over a decade. Many of those of us on the front lines of coming off drugs have known this for many years. I never know how I’m supposed receive these shocking “new” scientific discoveries. it seems to erase the work so many of us have been doing for so long to act like this is new information without calling attention to the many thousands who’ve known this well before the medical establishment gave a shit. I go off and hide my tail since all of us have been ignored for so long it’s like we’re not even here. I’m certainly no longer particularly inclined to talk about how many of us are still totally disabled because it’s exhausting and debilitating in ways that make it counterproductive to healing. Anyway…yeah, spread the news to all the people who continue to ignore us…maybe someday that will change too.
nice, thanks Alex
and also, yeah, on some level we are just all playing with language which is at best, always, only a pointer towards a reality none of us can grasp with language. When we can recognize that we are playing with a very imprecise tool we can lighten up…and well, play with one another. We don’t have to clobber each other over the head if we engage with one another energetically. Listen to each others hearts beyond the words. And in my mind this capacity is one of embracing spectrums…multiple, endless spectrums…
right…I don’t stop at bipolar because to me it diminishes while also used to denigrate and pathologize, but I agree that we are in some absolute sense, every human being, bipolar…if we are conscious we grasp a multiplicity of spectrums so that we are in fact, also, so much more. I wrote this in my piece that I link to above as an epilogue:
“I am life. I am psychedelic. I am kaleidoscopic. I am conscious. I am aware. I am chaos. I am silence. The term bipolar *disorder* attempts to diminish. Two poles? In a world of endless spectrums all interlacing into oneness? What nonsense. The term bipolar is attached to people like me because we frighten those “treating” us. We are sensitive, open, people in need of shamanic-like guidance. The current psychiatric regime doesn’t know how to support us in profound ways. We are finding out how to do that for ourselves and with each other. I do not identify as bipolar nor do I identify as *not* bipolar. I’m just another little human being and so are you. Please don’t project your pathology onto me.”
from this perspective bipolar simply doesn’t go far enough which is why I don’t embrace it as diagnosis…it diminishes even if it describes something that exists as well (and I’m talking beyond pathology because as pointer to pathology it’s completely off-base in my opinion)
I think we’re all the second coming of christ!!
Hello! Welcome Chris to Mad in America…
Chris is a good friend. And I’ve been working with him for a while and with what his narrative creates within me as well. I actually have a video I posted a couple of days ago that speaks to exactly that. I’ll share the link here rather than comment.
Mad Spiritual musings on diversity and inclusivity https://youtu.be/-ovX-YIrRu0
and, no, I do not personally reappropriate that term at all…in another more personal and poetic-like from the gut post also responding to our relationship I write:
Bipolar: contemplation about the psych label – Everything Matters: Beyond Meds https://beyondmeds.com/2018/05/28/bipolar-contemplation/
I find the dialogue to be deeply enriching. In holding one another’s experience and narrative…we are both enriched.
Hey Eric,
great to see you. I am so sorry you went through such a horrible experience. I can feel into everything you said and imagine what it must have been like to some extent. I know what being that sensitive is like and I’ve had those sorts of radical back and forths with various different things I thought at first were therapeutic.
And I also I have a radically different experience with neurofeedback (and thus it is with us sensitives…different thing affect us differently at different times and different people too can have radically different experiences.)
If I hadn’t met the neuropsychologist who is now, many years later, still a good friend, I might not have come off drugs at all!! he was the first professional who treated me as an equal and told me I could come off drugs if I wanted to. Neurofeedback as practiced by him (and there are a lot of different sorts of neurofeedbacks) did nothing radical for me…and in fact did nothing at all really…I was on a massive cocktail of drugs at the time and that’s probably why…in any case…that man became a wonderful ongoing supportive friend over the years as I came off drugs and then started the long journey of healing off of them…he no longer practices and we’re still friends. We’re colleagues even. We’ve loved to share our work with one another. He understands the nature of consciousness and is very sensitive about folks like you and me…he believes everything I tell him about my radical experiences and that’s very unusual.
When I was coming off the drugs he was the first to name my experience as brain injury. That was not commonly understood when I was coming off…I documented that and now the sorts of injuries we incur are generally understood to be brain injury (among those who know drugs do that, anyway) …
I’m again sorry that the neurofeedback did that radical yoyo thing with you. A phenomena I know too well…(with other things as I’ve been healing my drug injuries) … the yoyo too seems to heal over time, slowly.
My very best to you. With love,
Monica Cassani
PS: I shared this with my friend as he is still writing and speaking and I know he’ll find it a valuable contribution. Thank you.